Thyroid Issues Anyone?

Poods71
Poods71 Posts: 502 Member
in Health and Weight Loss
I have been suffering for years with Underactive Thyroid issues and have been tested in the past and been told my thyroid is fine. So carried on feeling crappy and putting on weight even when I was on a diet thinking the doctors knew what they were talking about. When I had my second daughter 2 and a half years ago I felt even worse. After blood tests they confirmed that I was Underactive and put me on Thyroxin. My life changed almost immediately. Losing weight, no more depression and mood swings, no more feeling achy and sore all the time like an old woman, no more forgetting everything not constantly feeling like I can't get on top of things work, housework, kids etc., having more energy and getting better sleeps. I had my life back. They keep checks on you when you are on it and after about maybe 6 or 7 months later they said that I didn't need to be on them anymore. I worried about going back to the way I was but thought, the doctors know what they are talking about so I'm sure it will be fine. For the first maybe few months I was fine but then little symptoms I had before started. I tried to ignore then at first thinking it might just be my imagination but once it got really bad I went back to the doctors. Turns out I was Anemic, which was why I was feeling so bad. But even after the Anemia was sorted I still didn't feel great so went for another thyroid function test only to be told it is unequivically normal!

The doctor did say I could go back on Thyroxin if I really insisted but would have to sign something to say I am doing it at my own risk. I was going to do that but he managed to talk me round to not doing it, which I am really annoyed about now.

I now feel even worse than I did then and don't have the energy to fight with the doctors and wait months to see the specialist and test results but guess that is what I am going to have to do.

Just wondered if anyone else has had these issues and have you taken Thyroxin against doctors orders and, if so, how have you got on?

Getting really desperate now and just want my life back.

PS there is a family history of Underactive Thyroid. My Auntie was told for years she was fine until she ended up in hospital. She didn't get sorted till she was in her 50's! I don't want to wait that long to get my life back.
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Replies

  • tracypotgieter
    tracypotgieter Posts: 4 Member
    HI very similar story to me - after loads of blood tests over the past 9 months and extremely low doses of thyroxin prescribed by my GP and putting on 13.5 kgs of weight - I went to a specialist who ordered more tests - definitely an underactive thyroid but again put me on a low dose to come back in 3 months - I have upped the dose myself and take2 kelp tablets and have lost 6 kilograms (12 lbs) in 4 weeks since upping the dose - but what a battle to get the doctor to agree with me - they are extremely conservative on the doses and worry about one having too much and getting thyroxicity but then the suffering of the insidiuous creep of an underactive thyroid is hideous and I am willing to take the risk to feel normal again.
    My friend who has over active thyroid and is very clued up said to get yourself to a specialist or endochrinologist
  • Poods71
    Poods71 Posts: 502 Member
    The doctor usually sends me to the thyroid clinic at the hospital. Is an endochrinologist different?

    What do kelp tablets do for you? Willing to try anything at the moment.
  • Poods71
    Poods71 Posts: 502 Member
    Actually, now I think about it I am sure the department I went to at the hospital was Endocronology and something else. They are the ones who are saying my tests are normal.
  • LittleMissDover
    LittleMissDover Posts: 820 Member
    You really shouldn't self prescribe thyroxine doses as too much can also be dangerous.

    Get yourself back to the doctors and insist on more tests, also get him to do blood count etc as it could be that you're anaemic instead.
  • Lionidle
    Lionidle Posts: 21
    I'm on Thyroxin for an under-active thyroid. Have been for a few years now and didn't lose weight until i started MFP and exercise. I firmly believe my under-active thyroid is a result of me putting on weight and feel that my thyroid function along with anything else that is struggling to work will be sorted when I'm at my optimum weight.
  • Poods71
    Poods71 Posts: 502 Member
    I didn't lose weight with diet and exercise until I started on Thyroxin and then the diet and exercise actually started to work. Before that it was really demotivating being good all the time with no results.

    But it's not really all about the weight as I am at a health BMI just (just don't want to start putting on again), it is more about how crappy I feel all the time. I was want my life back before I am too old to enjoy it.
  • mfprichard1
    mfprichard1 Posts: 37
    I was found to have under active thyroids levels about 6 months ago. I felt like crap everyday. My GP sent me to a endocrinologist and he only wanted to monitor me for 3 months. I gained 1- 1 1/2 pounds a week for total of 40 pounds. I went from running over 3 miles a day to barely being able to make myself get out of bed and taking mid day naps. My GP did a complete comprehensive profile including vitamin D level. My vitamin D was extremely low. I now take 100,000 units of prescribed vit. D a week. It has made all the difference. I'm slowly starting to feel like me again. Not to mention, I found out that low vit. D levels can cause decreased thyroid function. Feeling bad is not normal. Have your GP to keep looking.
  • Poods71
    Poods71 Posts: 502 Member
    Thanks for that. I don't know if I have been tested for Vitamin D, will have to ask about that.
  • Poods71
    Poods71 Posts: 502 Member
    I know what you mean about the exercise. I used to go to the gym 5 to 6 times a week and it just got to the point I physically couldn't do it anymore and completely stopped. I hate the fact that I used to be so fit and now I'm not.
  • mfprichard1
    mfprichard1 Posts: 37
    I went from wearing a bikini a year ago to wearing empire waist dresses only. WE will get back there together. Pray and stay focus. God is in control. I have lost 16 pounds so far in 3 month. I am walking 5-6 miles a day. Slowly but surely.
  • Poods71
    Poods71 Posts: 502 Member
    I'm trying to stay positive. Going to make an appointment with the doctor. You're right, we will both get there (I don't think I will ever have a bikini body again after two c-sections though lol).

    Sounds like you are doing everything right, good luck :flowerforyou:
  • Poods71
    Poods71 Posts: 502 Member
    Also, are you on Thyroxin just now or is it just vitamin D?
  • omma_to_3
    omma_to_3 Posts: 3,265 Member
    What are your test results? Do you have actual numbers?
  • Rockmyskinnyjeans
    Rockmyskinnyjeans Posts: 431 Member
    I have been on Synthroid for years. This past week, for the first time in 2 years, I had a normal reading on my thyroid. That means my current dosage (which is prescribed) is working. I hope you get answers soon!
  • dlmowrey
    dlmowrey Posts: 22
    I feel you pain!!! I had my thyroid removed 7 years ago and have been stuck ever since. Please friend me and let me know what helps you!!
  • llsand
    llsand Posts: 87
    Ok

    So here’s the « downlo » on the Thyroid issue. If your family has a history of Thyroid issues (underactive OR overactive), like any other disease, you are considered high risk for also developing and/or transmitting the disease.

    The only specialist that can accurately confirm this is an endocrinologist (they often also treat diabetics this maybe why you have the feeling you saw something else + endocrinology). Because a Thyroid dysfunction is sometimes hard to identify, the best way to get tested is the following: 1 - “Blind” test -> The doctor feels the Thyroid on your neck either looking away or standing behind you to feel if it’s enlarged. 2 – Bloodwork, to see if the levels are correct. 3 – An ultrasound: It enables the doctor to see if the Thyroid is enlarged and/or if there are nodules. In case of doubt, these three tests are very important because you can go on not being properly treated all your life and basically suffer the consequences without any solution. Example: How I got diagnosed.

    Had pretty much the classic Thyroid symptoms but when I got bloodwork, it would say that the levels were low but normal. When I got the “blind” test, sometimes my Thyroid was slightly enlarged and sometimes “normal”, doctors just said that “it happens” and that the Thyroid is sometimes tired (weight gain, stress etc etc) which is true and happens, but, one day one doctor said enough refused to accept the “low but normal results” and ordered an ultrasound. Conclusion: I have Hashimoto Hypothyroidism which is basically one of the worst you can have because it’s considered genetic, auto-immune and an open book to all forms of Hypothyroidism. Not bad hun ?

    Been taking Levothyroxin and Euthyral (which is also a form of Levothyroxin) for ten years, because it’s kind of sketchy, I get tested every 6 months and see my endocrinologist right after to see if my treatment needs adjusting. I also got a ultrasound check up this week to see if there are any nodules – all ok thank god!

    In any case, you need to not only rely on one test or one doctor. I had dentist tell me things were strange when I was a teen just to have other doctors only trusting the blood results and saying that everything was ok. I was left untreated until my late 20s. Also, if in fact you are OK and you are taking Thyroxin, it’s dangerous in the long-term. They are hormones; your Thyroid manages everything in your body. Imagine it this way : If your brain is the motherboard and your heart the battery then the Thyroid is the ventilator. Without it, you over heat, you burn out, no going back.

    In France, years ago a pharmacy sold “herbal medicine” that they made to help loose weight . The women who took it had lots of energy and lost a lot of weight, but, some also died of heart attacks (over active heart rate). They discovered that the "herbal medicine" was acutally hypothyroidism medicine ( Thyroxin ). That was dangerous and needless to say illegal.

    Get properly checked by a specialist and talk to him/her about your family history and your symptoms.

    Hope this helps!
  • Jenn728
    Jenn728 Posts: 683 Member
    An underactive thryoid is so frustrating. I've been dealing with it for about 3 or 4 years now. I have all the classic symptoms: weight gain (around 70 pounds), low energy, hair loss, memory loss. I lost my health insurance a couple of years ago and couldn't afford the frequent blood tests anymore, so I have not been tested in a while. I have an appointment at a clinic on Monday to finally get this under control.
  • Poods71
    Poods71 Posts: 502 Member
    What are your test results? Do you have actual numbers?

    I honestly don' know sorry. I find all of the numbers really confusing and even the doctor trying to explain it doesn't help. But the wording they used on the last letter they sent to me was uneqivially normal. Shame I don't feel normal lol
  • Poods71
    Poods71 Posts: 502 Member
    I have been on Synthroid for years. This past week, for the first time in 2 years, I had a normal reading on my thyroid. That means my current dosage (which is prescribed) is working. I hope you get answers soon!

    That's great, you must be over the moon and thanks I hope I do too :smile:
  • Poods71
    Poods71 Posts: 502 Member
    Ok

    So here’s the « downlo » on the Thyroid issue. If your family has a history of Thyroid issues (underactive OR overactive), like any other disease, you are considered high risk for also developing and/or transmitting the disease.

    The only specialist that can accurately confirm this is an endocrinologist (they often also treat diabetics this maybe why you have the feeling you saw something else + endocrinology). Because a Thyroid dysfunction is sometimes hard to identify, the best way to get tested is the following: 1 - “Blind” test -> The doctor feels the Thyroid on your neck either looking away or standing behind you to feel if it’s enlarged. 2 – Bloodwork, to see if the levels are correct. 3 – An ultrasound: It enables the doctor to see if the Thyroid is enlarged and/or if there are nodules. In case of doubt, these three tests are very important because you can go on not being properly treated all your life and basically suffer the consequences without any solution. Example: How I got diagnosed.

    Had pretty much the classic Thyroid symptoms but when I got bloodwork, it would say that the levels were low but normal. When I got the “blind” test, sometimes my Thyroid was slightly enlarged and sometimes “normal”, doctors just said that “it happens” and that the Thyroid is sometimes tired (weight gain, stress etc etc) which is true and happens, but, one day one doctor said enough refused to accept the “low but normal results” and ordered an ultrasound. Conclusion: I have Hashimoto Hypothyroidism which is basically one of the worst you can have because it’s considered genetic, auto-immune and an open book to all forms of Hypothyroidism. Not bad hun ?

    Been taking Levothyroxin and Euthyral (which is also a form of Levothyroxin) for ten years, because it’s kind of sketchy, I get tested every 6 months and see my endocrinologist right after to see if my treatment needs adjusting. I also got a ultrasound check up this week to see if there are any nodules – all ok thank god!

    In any case, you need to not only rely on one test or one doctor. I had dentist tell me things were strange when I was a teen just to have other doctors only trusting the blood results and saying that everything was ok. I was left untreated until my late 20s. Also, if in fact you are OK and you are taking Thyroxin, it’s dangerous in the long-term. They are hormones; your Thyroid manages everything in your body. Imagine it this way : If your brain is the motherboard and your heart the battery then the Thyroid is the ventilator. Without it, you over heat, you burn out, no going back.

    In France, years ago a pharmacy sold “herbal medicine” that they made to help loose weight . The women who took it had lots of energy and lost a lot of weight, but, some also died of heart attacks (over active heart rate). They discovered that the "herbal medicine" was acutally hypothyroidism medicine ( Thyroxin ). That was dangerous and needless to say illegal.

    Get properly checked by a specialist and talk to him/her about your family history and your symptoms.

    Hope this helps!


    Thanks for that. I have had the blind test and he did say they felt enlarged and I tell myself. Sometimes they feel bigger than others. I have had the blood tests too, which they keep saying are normal. I haven't had an ultrasound though, don't know if they do that in Scotland but I could ask about it I suppose.
  • Poods71
    Poods71 Posts: 502 Member
    An underactive thryoid is so frustrating. I've been dealing with it for about 3 or 4 years now. I have all the classic symptoms: weight gain (around 70 pounds), low energy, hair loss, memory loss. I lost my health insurance a couple of years ago and couldn't afford the frequent blood tests anymore, so I have not been tested in a while. I have an appointment at a clinic on Monday to finally get this under control.


    Really sorry you can't get tested just now, hope you can get that sorted soon and feel better. I suppose that is one good thing about Britain, we get free healthcare. Then again if I was paying maybe they would be trying harder to sort out what is wrong with me.
  • vjt1976
    vjt1976 Posts: 43
    I also have under active thyroid. My doctor told me I would be on medicine for the rest of my life. That is even if I lose weight. I would find a nother doctor for a second opinion. If your instincts tell you something is wrong with your body you need to listen to it and find someone who will help you! Take the time to research doctors in your area. Good luck!
  • Poods71
    Poods71 Posts: 502 Member
    I also have under active thyroid. My doctor told me I would be on medicine for the rest of my life. That is even if I lose weight. I would find a nother doctor for a second opinion. If your instincts tell you something is wrong with your body you need to listen to it and find someone who will help you! Take the time to research doctors in your area. Good luck!

    To be honest my doctor is really good. It is when they refer me to the hospital that the problems begin as they are the ones who do the tests and decide if I get the thyroxin or not.

    I have had enough of living like this though and I am going to doctors next week. My husband is going to come with me to get the point across to them that this is not all in my head and how much better I was when I was on Thyroxin.
  • llsand
    llsand Posts: 87
    Yes, do ask for an ultrasound because it’s the only way they can see if there are nodules and have an accurate reading of your Thyroid. I didn’t know it existed before either until my doctor told me and prescribed it regardless of the blood test results. If that’s normal, then there’s nothing else you can do and you probably don’t have an active Thyroid problem. This doesn’t mean that It wasn’t underactive the last time, but these things happen and I actually hope that it was just a lull in your system because that means you are not sick but just needed temporary help from the Thyroxin.
  • Tlkt1969
    Tlkt1969 Posts: 32 Member
    At the end of April I had my thyroid burned out with the radioactive iodine treatment due to hyperthyroidism - now I have gone into hypothyroid and currently they are finding what the right kind of sythenoid I need to be on yesterday it was increased from 100 to 125 per day as I was on medicine for 2 months and still gaining weight and feeling extremely tired. The only way I found out my thyroid was out of whack was through a regular physical and blood work. Currently seeing a specialist to get everything back on track crazy to think how much your thyroid controls and with me not having mine now it is much harder. Just want to get the weight off and feel so much better . . . any one who has things that have helped them would love to hear.
  • freckledrats
    freckledrats Posts: 251 Member
    While you might be in the "normal" range for free T4 levels, everyone is just a little different. Jane Doe's pituitary gland might be striving for a level of 1.7, can only get to 1.1, but it registers as "normal" so she doesn't get the medication that would improve her quality of life. But it's very difficult sometimes for doctors to tell what you need. The test for TSH shows if your pituitary is being overworked in the process of trying to get your thyroid gland to produce more T4. While 5.0 might be in the "normal" range, it seems to me some doctors just don't see that 1.1 T4 with 5.0 TSH and realize that you might not be at exactly the right dosage, even though both levels are technically "normal."
  • MrzBlessedLady
    MrzBlessedLady Posts: 164 Member
    bump for later
  • juli_jones
    juli_jones Posts: 101 Member
    You need to make sure that your Dr is doing ALL of the boodwork. Usually they just check TSH. Mine is "with in normal range," however, I have been on medication for 26 years (mine was diagnosed at age 12). The area that mine is off is the T3 and Thyroid antibodies. Have your Dr check...T3, T4, TSH, Total Thyroid and Thyroid Antibodies.....just checking TSH isn't enough to get an accurate diagnosis.
  • llsand
    llsand Posts: 87
    You need to make sure that your Dr is doing ALL of the boodwork. Usually they just check TSH. Mine is "with in normal range," however, I have been on medication for 26 years (mine was diagnosed at age 12). The area that mine is off is the T3 and Thyroid antibodies. Have your Dr check...T3, T4, TSH, Total Thyroid and Thyroid Antibodies.....just checking TSH isn't enough to get an accurate diagnosis.

    This for blood work !
  • omma_to_3
    omma_to_3 Posts: 3,265 Member
    You need to make sure that your Dr is doing ALL of the boodwork. Usually they just check TSH. Mine is "with in normal range," however, I have been on medication for 26 years (mine was diagnosed at age 12). The area that mine is off is the T3 and Thyroid antibodies. Have your Dr check...T3, T4, TSH, Total Thyroid and Thyroid Antibodies.....just checking TSH isn't enough to get an accurate diagnosis.

    This for blood work !
    \

    Agreed! That's why I asked. They may not have checked everything they should be checking.

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